While in KC we enjoyed swimming in the hotel pool, walking around the KC Botanical Gardens, and visiting the Deanna Rose Children's Farmstead with the Maag family. Of course, the real highlight of the trip was getting the chance to spend time with three other families who understand PBD-ZSD.
|Ethan's favorite thing about the Children's Farmstead were the cow bells!|
|Although it isn't a great picture, its proof we were all together.|
Monday night we enjoyed pizza in our room along with the Gamble family and our friend Abby who drove in from Lincoln to hang out with us. Abby is very special friend to the GFPD and has volunteered in the childcare room at all of our conferences. It was great to spend a few hours catching up. Ethan warmed up to Miss Abby right away. He is such a charmer!
On Tuesday morning we left the hotel early to go to the Children's Hospital. Ethan did great during the DEXA scan and then we headed over to see Dr. Rizzo. The appointment went as well as could be expected and Dr. Rizzo assured us that we were doing everything we needed to be doing to manage the symptoms of PBD-ZSD. Ethan's DEXA scan showed that his bone density seems to be pretty stable and that probably isn't contributing to why Ethan has lost some of his mobility. While it is great that his bones aren't bad enough for us to need to look into possible bone density treatment options, the reality is that Ethan's loss of mobility is likely related to the progression of PBD-ZSD and/or that Ethan's mobility has simply plateaued. Despite that, Dr. Rizzo was encouraged about Ethan's progress in potty training/scheduling and that Ethan's overall health is good, considering he has PBD-ZSD. We also discussed Ethan's increased irritability and his problems sleeping, and although Dr. Rizzo didn't have any immediate solutions we are going to talk to Ethan's neurologist about some possible medicines to try. The hard truth is that many children with neurological diseases have a difficult time sleeping and can become very irritable.
The drive home on Tuesday was a tough one, but we made it home eventually. Ethan was a real trooper. While we were sad to have to leave all of our friends and missed them even before we left, it was good to be home.